Neuroendocrine Cancer Awareness

Recent Entries

  • NET Newsletter AUGUST 2017

    NET News

    The following news items may be of interest:

    • PRRT takes a step forward to being formally approved in USA. FDA acknowledges receipt of revised application for approval.  Click here.
    • However, in UK, there is a threat that PRRT won’t be approved despite a positive recommendation by the scientific committee of the European Medicines Agency (EMA).  Advanced Accelerator Applications (AAA), the manufacturers of…
    • 14 Oct 2017
  • The Invisible Neuroendocrine Tumor Patient Population

    The Invisible NET patient population

    I found some of the quotes from the recent NET SEER Database study very interesting.  The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program is a comprehensive source of population-based information initiated in 1973 that is updated annually.  The NET study is formally titled “Trends in the Incidence, Prevalence, and Survival Outcomes in Patients With Neuroendocrine Tumors…

    • 13 Sep 2017
  • At home with Lanreotide

     The Somatuline 'reservoir' forming in the deep subcutaneous tissue[/caption]

    I think after 87 injections (as at 11 July 2017), I think it's safe to say I'm now 'at home' with Lanreotide (Somatuline Autogel - Somatuline Depot elsewhere).  I'm looking forward to celebrating my centenary 'butt dart' in a years time!

    I was fortunate enough to actually have the injection…

    • 28 Aug 2017
  • Living with Cancer – 6 tips for conquering fear

    Before I was diagnosed with cancer, my relationship with my health was fairly distant. I had minor irritants that seemed to come back now and then, nothing that was going to kill me. So I just put up with most of it and time was frequently a good healer. Occasionally, I would use medicine to speed up the healing or ask a doctor for advice. Even leading up to my diagnosis, this was my strategy despite some strange things…

    • 24 Aug 2017
  • The trouble with the NET (Part 3) – Miracle Cures

    Since I started blogging, I’ve had to become quite savvy at forming headlines for my posts as the wording can be a factor in whether someone reads it or not. A post picture can also influence.  There’s a third factor and that is credibility – I’d like to think I’ve worked hard to earn that level of trust in my ‘product’. I use the NET to talk about NETs!  I’m a genuine guy with…

    • 19 Aug 2017
  • Don't believe the hype - Neuroendocrine Cancer Myths

    Don't believe the hype - 10 myths

    There’s a lot of inaccurate information out there …….

    Myth 1:  All Neuroendocrine Tumours are benign

    Not true.  By any scientific definition, the word ‘tumour’ means ‘an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumours may be benign (not cancerous), or malignant (cancerous)’.  HoweverThe World Health Organisation…

    • 3 Aug 2017
  • Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor

    On the day I was diagnosed, I hadn’t really thought about questions, the only one I actually remember asking was “how long do I have left to live” (I watch too many movies!).  On the day of diagnosis and a period beyond, people tend to feel emotions of shock, denial, anger and sadness, before going on to accept their situation.  Yes, I ‘googled’ but not a great deal really – although some things I…

    • 1 Aug 2017
  • There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient

    Thousand of people are diagnosed with cancer every day.  Neuroendocrine Cancer now forms an increasing number of these diagnoses thanks to greater awareness, better diagnostic tools and more accurate reporting systems, including the ability to get the correct cancer type into the statistics.  However, although numbers are on the increase, it doesn’t necessarily directly relate to a better diagnostic experience – that is…

    • 6 Jun 2017
  • In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

    The first question to the first ever joint patient-physician symposium

    In the last 12-24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer.  Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological…

    • 5 Jun 2017
  • Poker Face or Cancer Card?

    Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time; and most did not stop me getting on with whatever needed doing.

    I served in the military from aged 16 until 45….. a long time!  On only two occasions during that 29 year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should…

    • 1 May 2017
  • It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial)


    5 years ago today, I had a bunch of lymph nodes removed. Two separate areas were resected, only one was showing growth but both were showing up as hotspots on an Octreoscan.  I had known since shortly after diagnosis in 2010 that ‘hotspots’ were showing in my left ‘axillary’ lymph nodes (armpit) and my left ‘supraclavicular fossa’ (SCF) lymph nodes (clavicle area). Some 10 months previously…

    • 24 Apr 2017
  • Recent Progress in NET Management

    jonathan-strosbergI recently wrote a blog called Neuroendocrine Cancer – Exciting Times Ahead! I wrote that on a day I was feeling particularly positive and at the time, I wanted to share that positivity with you. I genuinely believe there’s a lot of great things happening. Don’t get me wrong, there’s a lot still to be done, particularly in the area of diagnosis and quality of life after being diagnosed. However, this is a really great…

    • 5 Apr 2017
  • 25 Life Lessons From a Two-Time Cancer Survivor


    Sometimes, a blog post comes along and it just resonates!  This was one I found via some new friends in Anti-Cancer Club (check it out – sign up for their newsletter). I got chatting with the author who has given me permission to post it here.  Shari Berman is a two-time cancer survivor. She was diagnosed with Hodgkin’s Lymphoma at age 25, days after returning from her honeymoon and a second time with breast can…

    • 21 Mar 2017
  • Things not to say to someone with cancer (featuring Macmillan Cancer)


    Graphics courtesy of

    This topic comes up regularly on patient forums, twitter, Facebook….. in fact everywhere!  Personally, I don’t tend to get too excited about it, although there can be extremes.  Most people (not all) are just stumped to know exactly what to say.  Even as a person with cancer, I sometimes feel awkward when faced with someone I just found out has a serious illness…

    • 19 Mar 2017
  • Endoscopy for NETs – taking the camera to the tumour


    An Endoscopy is a procedure where the inside of your body is examined using an instrument called an endoscope. This is a long, thin, flexible tube that has a light source and camera at one end. Images of the inside of your body are relayed to a television screen. Endoscopes can be inserted into the body through a natural opening, such as the mouth and down the throat, or through the bottom.  The mouth route is more accurately…

    • 14 Mar 2017
  • Road ahead closed – Bowel Obstructions


    OK – we’ve gone through diagnosis, we’ve gone through treatment and now we need to live with the consequences of cancer and it’s treatment.  Not a day goes by when I don’t feel some twinge or some minor pain and I think ‘what was that?‘.  Fortunately, many things can just be day-to-day niggles. It’s the cancer …. easy to say, sometimes not easy to prove.  However, for Neuroendocrine Tumour (NET) patients who have…

    • 13 Mar 2017
  • In the news: Neuroendocrine Tumour Drug in Trial – Cabozantinib

    What is Cabozantinib?

    Cabozantinib is an oral drug which works by blocking the growth of new blood vessels that feed a tumour. In addition to blocking the formation of new blood cells in tumours, Cabozantinib also blocks pathways that may be responsible for allowing cancers cells to become resistant to other “anti-angiogenic” drugs. It is a type of drug called a growth blocker.  Cabozantinib has been studied…

    • 6 Mar 2017
  • Progress report on NETSPOT® (Ga68 PET) and PRRT (Lutathera®)


    Here’s some extracts from the CEO of Advanced Accelerator Applications 2016 Progress Report published on 9 Jan 2017.  I’ve added additional comment where necessary to provide a richer picture.  There is some really useful information, particularly for those looking for updates on PRRT (Lutathera®).  I found the content very positive and let me say that the header to the report was entitled “….Asserts Confidence…

    • 28 Feb 2017
  • Neuroendocrine Cancer: Nodes, Nodules and NET Nonsense

    www-cancer-gov_publishedcontent_images_cancertopics_factsheet_sites-types_metastaticA fairly common disposition of metastatic Neuroendocrine Tumours (NETs) is a primary with associated local/regional secondary’s (e.g. lymph nodes, mesentery and others) with liver metastases.  Technically speaking, the liver is distant. However, many metastatic patients have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck.  In certain NETs…

    • 1 Feb 2017
  • Lanretotide vs Octreotide



    Somatostatin Analogues are the ‘workhorse’ treatments for those living with NETs, particularly where syndromes are involved. Although it can sometimes seem like they are only associated with serotonin releasing tumours (i.e. what might be described as Carcinoid), these types of drugs can be used to help with other NET types including Pancreatic…

    • 22 Jan 2017
  • Keep your light burning


    I recently met a colleague who I hadn’t seen for 30 years. He was more than just a colleague, he was once my ‘Commanding Officer’. He had been made aware of my illness but after asking how I was, he was content with my short explanation “I’m not dead yet“. The great thing about soldiery is that you can pick up where you left off 30 years ago as if it was only yesterday and ‘bravado’ is not only allowed, it’s expected…

    • 3 Jan 2017
  • Neuroendocrine Tumours: a spotlight on Pheochromocytomas and Paragangliomas


    I spend a lot of time talking about the most common forms of Neuroendocrine Tumours (NETs), but what about the less well-known types?  As part of my commitment to all types of NETs, I'd like to shine a light on two less common tumour types known as Pheochromocytomas and Paragangliomas - incidence rate approximately 8 per million per year. They are normally grouped together and the definitions below will confirm…

    • 29 Dec 2016
  • Neuroendocrine Tumours – Carcinoid Crisis

    NET Patient Foundation wallet card (example guidance)

    The word ‘crisis’ has a wide range of meanings and it’s well used in the media to catch the reader’s attention. Lately, the terms ‘political crisis’, financial ‘crisis’ and ‘constitutional crisis’ appear almost daily in media headlines. In a previous life, the term ‘crisis management’ was used daily…

    • 19 Dec 2016
  • NET Syndromes – chicken or egg?

    We’ve all heard the age-old question about the chicken and the egg?  Scientists claimed to have ‘cracked’ the riddle of whether the chicken or the egg came first. The answer, they say, is the chicken. Researchers found that the formation of egg shells relies on a protein found only in a chicken’s ovaries. Therefore, an egg can exist only if it has been inside a chicken. There you have it!


    • 18 Dec 2016
  • Neuroendocrine Tumours – benign vs malignant


    One of the most controversial aspects of Neuroendocrine Tumours (NETs) is the ‘benign vs malignant’ question.  It’s been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ….. at least from those willing to engage in the conversation. At best, this issue can cause confusion, particularly to those…

    • 15 Dec 2016